The Cost of Cancer

Thus far, my blog has been about my experiences with the mental and physical costs of having cancer.  I am really, really lucky to be financially stable, with me and my husband having steady jobs and money in the bank. Since being denied a drug by my insurance company, however, I have been thinking a lot about the economic cost of cancer.

I was diagnosed with cancer at an inconvenient time.  (But is there really a convenient time?) I had just left my library job of 14 years to start programming.  The library had amazing insurance and for a long time, they paid the full premium.  My new job offers health insurance and covers the premium but, like with many jobs, there was a waiting period before I could benefit from their insurance – 3 months. 

It was in that waiting period was when I was diagnosed with cancer.

Knowing that I was going to be on my own for insurance, I went to the health care exchange (Obamacare).  I had planned on keeping my library coverage through COBRA but that would have been $1500 / month – like I said, good coverage.  Through the healthcare exchange, I was able to get good insurance for $500 / month.

I remember talking to my husband about which plan to get.  I’d never been seriously injured or sick.  All of those firsts I’ve had over the last weeks (first IV, first surgery…) were because I had been in such excellent health.  We decided it was worth paying a little more, it was just for 3 months, and opted for a plan with my preferred doctor and a lower deductible. Insurance is worth it for these just-in-case times.

My insurance has proven to be very good and I am lucky enough to be in a position where I don’t have to worry about being able to pay the bills.  My doctor wanted me to try a chemo drug that has tested very well for people with my type of cancer, in addition to the standard cancer cocktail.  The hospital sought pre-approval from the insurance for this additional drug and it was declined.

The hospital then got in touch with me.  They had already started the paperwork for me to apply for financial aid from the drug company.  Because that is something that people have to do – fight cancer and figure out how to pay for the treatments!?!  The hospital had already started the application for me (before I even knew I needed it) and all I had to do was answer a few questions for them to complete it.  

While waiting to hear from the drug company, we did a little research into the drug.  If it was only a few hundred dollars, we could manage that.  It cost $10,000 / dose and I would need 4 doses!!! I have people advocating for me – my medical team and my family, but I can’t imagine how people go through this alone.  Not knowing what is going to happen to your body is terrifying, but worrying that you won’t be able to afford care is inexcusable.

I have already been so lucky through this journey. My husband and I both have jobs that allow us flexible schedules, at least for now, and there are things and people in place to help us. Over the course of writing this post, I was approved for aid from the drug company and will receive the drug at no cost.

I’m not really sure where I’m going with this post. I don’t have any answers on how to fix the system, but the last few weeks have been eye-opening for me. I come from a place of privilege, but I see the gaps in our communities. Sure $500 / month for insurance isn’t something I want to spend, but it is very do-able. For many people, that kind of expense would mean choosing between basic needs or insurance. That need, coupled with unknown health challenges and the daily struggle of care, it must feel insurmountable in an already trying time.

When I told my new job about my diagnosis, after sharing their support, one of the first things they did was make sure I knew about their health insurance. It is a company that cares about its employee’s physical and mental health. I had not realized what a unique gift a workplace like that can be in a challenging time like this. Please don’t get me wrong – I love my library – but I’m pretty sure they wouldn’t be so keen on letting me come and go as I please and encouraging me to take naps! 😉

A quick recap on my goings-on:

I’ve been feeling pretty good lately.  I have now completed two rounds of chemo, including last week with a new drug.  So far my appetite and taste buds are behaving as usual and I still have my hair.  The only side effect that I’ve noticed at all is being tired, so I often try to work a nap into my day.  

I’ve recovered well from having surgery to put in a port, and while it still feels weird I can see the appeal of not being stabbed over and over again.  The oddness of having this hard, little disc in my chest is temporary.  

Overall, I feel strong and very grateful for all of the support in my life.  Things are going well now, but when they get difficult I know I have a lot of people backing me up.  Thank you.